Thanks for the care

We've had a break. This is a big event - a week away in another part of the country without most of the responsibilities or looking after our son. Well almost - we could only get a one week, and we didn't know until a day or so before that we would be able to go, and we did need to ring in to support/advise every day. But we did get away, got some relaxation and rest.

Fortunately, his chest behaved itself and we didn't have to come back early to sort out any critical issues. (we've had to in the past.) Thank you to the nurses and care provider organisations. I know it's their j0b and they get paid but they don't have to do it, the pay isn't that great and they do care about him - it's not just a job, and we're very grateful. They are good people.

I suppose this can be seen as an anti-rant, but there's a real danger the work these people do is taken for granted - it shouldn't be. I know we do his care for nothing, but if he wasn't disabled, would I do a job like this when I could probably get paid more doing something 'valuable' like banking. They do it and ought to be recognised for that. Thank you - you know who you all are - and we do appreciate you.

Every breath you take

In case you were wondering - my son is improving - the chest infection looks like its cleared. His chest expands and contracts with air - it's called breathing, and it's great and we don't take it for granted.

He's still tiring easily but he's taking an interest and more awake than he has been, more of the time. As you'll have noticed on recent posts, I can now get back to being a pain in the neck of the health and social services apparatus because the issues haven't suddenly gone away - until next time he's ill. (I don't think even they would want my son to be ill just so they could shut me up for a bit - that way lies paranoia... )

Jewel theft

Anyone who has a child with a learning disability knows he/she gets less good health care than the general population. They don't always understand that pain isn't normal and can often have something done about it - and they often can't communicate it until it gets extreme. Well now research shows, it's official. Prof. Emerson and Dr. Baines at Lancaster University have just produced a report 'Health Inequalities & people with learning disabilities.' that spells out how and who are affected - and how poorly these people are served. They die younger, have more illness and the current health service isn't responding proportionately. It may not be news but it is true.

An personal example -
We've watched (on the ward) people with learning disabilities being admitted to hospital needing a gastrostomy (feeding tube) replaced. It actually takes 15 minutes and doesn't need a doctor or even a qualified nurse - I've done one myself and my wife is regularly fallback and helps train nurses in this procedure. It has to be done promptly - because all the persons feed, liquids and medication go down it, and also because if it isn't, the hole into the stomach closes up and needs an operation to reopen it. We watched one learning disabled lady unecessarily admitted to hospital and not get hers done for four days - no food, no drink, no epilepsy meds, much distress and a number of complications - I don't know if she had to be operated on. There was no one trained for this procedure on duty over the Bank Holiday.
I didn't stand idly by and just watch, but when I did comment it was made very clear to me that it was none of my business and our own position would be affected if I took it any further. We were discharged later that day.

I've mentioned elsewhere on this blog how inadequate hospitals are at dealing with disability and how they put vulnerable people at risk. I don't blame the individual doctors, nurses and nursing assistants - I blame a 'one size fits all' system with a 'tick box' culture. I grew up with the NHS as the crown jewel in a welfare state, with decent health care free to those who needed it - somebody stole the crown jewel and replaced it with a very poor paste fake - and I want it back.

Plea for support

I'd just like to ask anyone reading this to consider supporting the Mencap 'Changing Places' campaign. Not about cross dressing or Andy pretending to be disabled on TV - simply trying to get places where people who can't use a normal toilet can get changed without having to go home early. The website is at http://www.mencap.org.uk/case.asp?id=448 if you want to know more.

I know there are cuts coming but I refuse to stop pushing for a better life for disabled people because the politicians have decided we're all going to suffer. Whatever the economy does, it isn't right that we have to change our son on the toilet floor. It's not dignified, it's not hygenic and it's not right.

If you know a councillor, tell them - if you are a councillor, provide one. Please.

Megaphone diplomacy

I have to say something about the 'coming cuts'. They worry the hell out of me. And the only thing I can do about them is refuse to accept that they are inevitable.

People with disabilities and their carers certainly aren't to blame - they haven't enough money to indulge in risky investments, property speculation or spend beyond their means (they were too poor to be lent money anyway.) Yet somehow the likes of Mr Diamond at Barclays, gets a new job with £11m.
OK, so life's not fair.

But spending money on care and people with disabilities should help us out of the recession. Carers, paid or unpaid, have such low incomes that any money they do gets spent directly on necessities - and so provides employment for others making, distributing and selling basic goods. It doesn't get frittered away into sub prime loans, hedge funds and dubious stock futures. And it's not like we're asking for more, just don't take away the little we have. (And we should get much of the money back when the government sells the banks off again.)
OK, so life's not rational.

But if something is unfair and daft - somebody, somewhere has to say so.

These cuts are unfair and daft.

Anybody got a megaphone?

Bit of a worry

4:45a.m. phone call. Adrenalin wake up. It's OK, but he's started fitting quite a bit and new nurse on first lone night shift, so wife goes over to support. Glad she rang - rather a broken night than a fits out of control or a nurse who isn't happy with his care.

So, wife goes over there and I get to stay here sweating (one parent is support, two is pressure.). I know she has the harder job but it's still hard waiting to hear he's settled - or not. No point sleeping now - not that I'd be able to.

I know he'll be OK, he's done this lots of times. It's just the not knowing doesn't get any easier. I should see this as an opportunity for 'spare time' but too hyped to do anything productive.

Sleep well it could be a good sunrise.

Nursing by numbers - sorry, wrong number

In a rare idle moment, I saw this article on the BBC news website http://www.bbc.co.uk/news/health-11097822 It's all about fears that elderly people getting malnourished in hospital. I'm afraid it got me rather angry. This is simply a different manifestation of what Mencap found in their 'Death by Indiference' report on people with learning disabilities in hospital. What really got my ire up was the perennial assumption, seemingly by all concerned, that this could be solved by monitoring and procedures - introducing red trays etc. for people at risk.

Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.

Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.

I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'

Rant not over - it's not over until the thin lady dies.

Beating people can be good

I don't think I'm a control freak, but I'm probably not the best person to judge that (or if I am, I probably am the best judge!).  But letting other people take responsibility for my son, and not knowing how he is when he's ill is really hard.  As I've said before, we have a really good nursing team, but he needs a lot of chest physio just now to prevent the infection re-consolidating.  They're good nurses but variable at doing physio, so we find ourselves going in, even when he's not officially with us, to do extra physio and PEP.  We try not to offend them but I'm afraid a bit of irritation with mum and dad is a small price to pay for an uninfected chest.

He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired.  The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical.  Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.

PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections.  On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently.  It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs.  It doesn't shift the debris - that needs something physical, like coughing or physio.  I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs.  I know physio is often prescribed, but the amount is usually trivial and not available at weekends.  I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).

The Big Issue

Daren't comment really, but son's chest may just be improving a bit. Antibiotics down to one - I think that's making him more comfortable. Intensive PEP mask (Positive End Pressure) physio and lots of 'rebound' therapy (specialist physio on trampoline) should stop it re-consolidating. He's certainly been less washed out today. Still too tired to do more than a couple of hours of anything but he did get out to see his friends today.

Apologies for not commenting on 'bigger' issues - I'm sure things are happening on the national policy front etc. but when things get like this, I'm afraid there is only one big issue for us - life will still be there when we come back to it, and if it's not we'll deal with it's absence then - or not. (I really didn't expect to get all metaphysical but the residual gray gunk that passes for a brain these days sometimes goes off on one itself.)

Everyone worries about their children

The chest goes on. He's really taking a long time to pick up from this infection. We're still doing whatever he enjoys - he went to a multi sensory environment he loves over the weekend and although the trampolining is really physio, he enjoys it so much we're making sure he gets as much of it as he can. He gets weary though and is too tired to do much. One session every couple of days takes it out of him and he has to sleep a lot to recover, on oxygen much of the time. He is a little better each day, and on the strength of that, the doctor has reduced him to one antibiotic. It does look like he's pulling round but times like this always remind us that it's his chest that is the real high risk factor, with his fits a slow second.

Sleeping and waking times for him are 'interesting'. He sleeps whenever he wants to, regardless of day or nightime. He has been known to sleep solidly for 48 hours and then stay awake for the same amount of time. He'll often be awake during the night and asleep all day, we've tried to get a pattern worked out but it really is random. One particular feature is that he actually has three 'phases' - awake, asleep and 'aggressive' sleeping (when he has muscle tone, but refuses to surface whatever stimulus you put in.) Unfortunately there also seems to be a fourth phase emerging where he goes into such a deep, unrousable sleep that his oxygen saturations drop alarmingly - we're hoping this is just a temporary feature of the chest infection and will clear as his airways 'block off' less with the secretions.

Unsung, unpaid - unstinting

I'm embarrassingly aware that there's someone I occasionally mention here who gets limited recognition for the major part she plays in my sons care. My wife has looked after him as the main carer for 27 years - I really just do the fetching and carrying and some of the unskilled mucky jobs. (When a nurse lost her new gold bracelet, it was my job to go through the clinical waste bag until the glint of precious metal became visible through a discarded protective glove carefully packed away inside a dirty continence pad - who said caring can't be fun.) Before the kids, my wife was a very well qualified senior nurse and now effectively acts as 'clinical lead' in most of our sons care, though many of the professionals with less time alive than she's had in nursing, still find it either difficult to acknowledge her skill or feel threatened by the depth and breadth of her knowledge. She still organises his drugs, does much of his care herself and takes over completely the shifts they can't cover, etc. etc. etc.. I help out as much as I can but she's the real lynch pin of this operation.

We've been told by medics, in the nicest possible way, that it's her fault he's still around. Before we had the care package, she worked 24/7, sleeping only in patches. I did what I could to help and at least I got to 'escape' to work during the day - she never had that luxury.

And for all this, she gets paid nothing. Now we're both retired (officially) even the pittance of her Carers Allowance has been taken away - it wasn't much but it did recognise what she did. Nothing in the care changed on her 60th birthday, but she was no longer officially valued. It doesn't make us that much poorer financially, but I really resent this - she's massively undervalued as it is. Oh, and we still have to fill in all the DWP forms every month (despite not getting the benefit) in case it affects his 'passporting' to other benefits and the empty lever arch files at headquarters start feeling peckish.

Beating his chest

Chest infection continues. Bit of a worry really as he still has some spots etc. that usually clear up with the antibiotics - doctor feels he's quite run down. Presumably infection main is viral and antibiotics are just breaking up any bacterial secondary infections. It's up to his immune system to clear the viral part. Physio helps clear gunk - particularly the stuff he gets on the trampoline a couple of times a week with ordinary and PEP (positive end pressure) mask in between.

The physio he's had has been a literal life saver as the recurrent chest infections would have taken over long ago had it not been for this progressive and intensive physio regime. Unfortunately none of it is provided by the NHS - the charitable service provider that does his day care employs a specialist physiotherapist full time for the people they deal with and it's pretty much down to him - we owe him a lot. When he took a well deserved holiday, all the NHS could provide was two basic sessions a week and they were unaware of PEP and unable to do the trampoline physio. The people were well meaning and good as far as they went but it worries me that the mainstream service is so poorly trained and overstretched these days.

Back to relying on charities - come back the workhouse, nothing is forgiven.

Life goes on

Apologies for absence - life sometimes takes over.

Son's chest infection appeared to be improving but reconsolidated when we changed antibiotics. Not back to square one but definitely didn't pass 'go' or collect £200. Back on the x2 stronger ones and looks like its helping - going by the muck coming up.
Meanwhile, had to take out a couple of days to help with major life changes/stresses for daughter 200 miles away. She's as important as he is and it feels bad giving him all the attention. She is incredibly self sufficient and deserves better.
Meanwhile again, storm in teacup about paperwork/admin. for a minor drug has blown up into a storm in a swimming pool, with much tears and stress it is now down to a storm in a large bucket - hopefully. 27 years of care experience counts for very little if the paperwork doesn't fit these days.

All this goes to prove that life does go on - it just isn't a lot of fun sometimes. (Oh, and on our first evening out for about a month, we won the pub quiz - so there must be a god somewhere, I'm glad he has the same sense of humour as me.)

Not very happy campers

It's been a fairly torrid time over the last fortnight. Quite a severe chest infection and he's still on low level oxygen, but seems to be on the mend. We've had to nurse him ourselves at home, largely due to staff sickness meaning we didn't know whether the next shift would be covered or not. In some ways I don't mind us being the fall back - it keeps us close to his care and someone has to provide the continuity, but it would be nice not to have the continual uncertainty about how many shifts we were covering back to back. We get exhausted increasingly quickly these days and are finding we need more days to recover from what we could have done without too much trouble 10 years ago. Some of it's the physical strain of 'moving and handling', some of it's the nursing work needing concentration on medication and treatment but a significant part is simply having him there 24/7 with or without other professionals working in our home. There's no privacy and I begrude that. It isn't any fun camping out in your own home - but it is necessary.

A minor irritation

When we took son to the hospital last week, he had to go for an x-ray. This is always good for a laugh as his spine shape and heart totally obscure his left lung - where the problem always is, and the hospital can't get the plates in between him and his moulded wheelchair - the shape of his spine means lying on the bed is out.

This time was even better. The Medical Assessment Unit was heaving and grossly undermanned. But they had to call a porter (who wasn't familiar with driving his attendant controlled, powered wheelchair) and insisted on sending a nursing assistant escort as well (who hadn't been told why she was needed). So off we trundled in convoy, with me driving the wheelchair, wife managing the suction, porter in front feeling like a spare part and nursing assistant behind wondering why she was there. They were very nice people and it wasn't their fault - but we really did know where x-ray was.

Why they hadn't provided a siren and a couple of motorcycle outriders was not explained.

Going with the (oxygen) flow.

It's been a heavy couple of weeks but it looks like we can see a bit of normality coming back. His chest has been two steps forward, one step back but he went quite a few hours off oxygen this evening without his oxygen saturation falling much and seems really alert just now. The consolidation on his lung seems to have cleared - the steroids have finished without a gastric bleed and his antibiotics finish tomorrow, so we'll be concentrating on physio to keep it that way. (His own physio is on holiday but still texted us from the beach to see how he was - we told him to get a life and a tan. He's a classic example of a brilliant, caring and dedicated professional making up for the deficiencies of a 'one size fits all' system.) Fits don't seem to have kicked in this time, thankfully.

Staffing also looks like it's starting to settle with people gradually coming back to work after various sicknesses. He's still at home with us but we're looking at possibility of going back to his own house in next few days if he stays well - assuming there are enough nurses to cover.

It's still a case of hoping the light we can see is the end of the tunnel - it could still be an oncoming train.

Still falling - it's a long way down

We're at last getting to grips with sons chest infection. IVI (Intra venous infusion - a drip) antibiotics combined with steroids seem to be making some headway but recovery is very slow.

Meanwhile, nurses are dropping like flies. Some seem to have same flu like infection though not as bad obviously. Net result has been no cover so he's at home with us, sometimes with, sometimes without nurses. All very unpredictable and wearing. Needs a lot of care when like this - physio, suction, checking oxygen levels etc. on top of normal stuff. Oxygen saturations have been quite poor so using oxygen concentrator most of time at present. Sleeping a lot just now as seems exhausted with coughing, but at least it isn't a nasty green colour now.

A nurse we thought was still ill has recovered so we're going to get a decent sleep tonight (as long as he doesn't throw another 5a.m. 'wobbler'.) Everything else on hold.

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.

Falling over in slow motion

Difficult time to post - will probably do something more when time and problems permit.

Wife largely, though not completely, recovered from hospital.  Son has developed serious chest infection we're only slowly getting on top of (hope not to be a repeat of Jan/Feb/Mar) - one result was a 5a.m. rush over to help staff on duty.  Same infection that gave him chest infection has given care staff 'flu' symptoms so major staffing gaps.  Fall back plan for covering staff sickness has fallen back and fallen over.  Carers not allowed to be ill - we have same infection but don't get time off, so now nursing sick son at home whilst ill ourselves and one of us still recuperating from major hospital episode.

Life's a bitch sometimes.

Normal - ish service will be resumed

Apologies for my absence. My wife had a sudden hospital admission, so along with shopping, meetings and other non essential activities (unlike caring, cooking, visiting hospital and housework), the blog had to stop for a while. Normal service probably never existed, so can't really expect its return any time soon. Anyway, she's now recuperating at home and supervising care services and domestic activities - it's at times like this I start to realise how little I actually contribute.

Meanwhile, our sons services sort of carry on. A nurse with one service calls in sick, so the other service picks up slack because the contingency plans are still not working. He missed a bit of his activity that day but got an unexpected lie in instead, otherwise he seems to have sailed through things reasonably - including a visit to his mum in hospital, which he slept through 80% of. Some care quality issues with an agency nurse (some are great, some not so great.)

This afternoon it looks like he's developing another chest infection, so back on the antibiotics. He's done really well lately, with a four/five week break since he last needed them. It may well explain why he's been having a few more longer fits at night that we were starting to get concerned about. The discomfort would have been enough to trigger them.

Anyway, back on the treadmill - need to find out why newly appointed nurses still not coming on stream - probably CRB checks.